PICU, Day #26, “choreoathetoid” and brain MRI

Seriously, just when we finally get some good news and start to turn a corner, we get slapped with another negative possibility!  It is incredibly frustrating!!

Late, late last night (after I blogged), Dr. Schiffmann and I emailed back and forth regarding his conversation with Hannah’s neuro doc here.  Chorea type of movements have never been documented in Gaucher’s Disease before, and he felt that, after talking with Hannah’s neuro, that it was likely a drug-induced movement disorder.  Something that once she was weaned off the meds, it would hopefully disappear.    He said the attending was likely going to want to do a brain MRI just to rule anything out.

Put me in a good mood.  A glimmer of hope.

I went down this morning, as I always do, right before rounds.  Hannah’s nurse, same one as yesterday, asked me how she thought I looked today.  I took one look at her, and I was so happily surprised.  Her movements were much, much less violent, and even though she was still constantly moving, it did not look as stressful and painful as the previous 3 days.

On rounds, they even talked about the rest of the plan to wean Hannah off the IV sedation drips and get her on only G-tube sedation (much less quantity, much less often) by Monday so that she could be transferred to the PCU by hopefully Tuesday.

Put me in a better mood.  More glimmers of hope.

Dr. Christine Eng, Hannah’s genetics doc, came by to visit and get an idea of what was going on.  She also agreed that these “choreoathetoid movements” were not known in relation to Gaucher’s disease either.  It was concerning to her, but since she had not seen Hannah the past few days, I did not put much into it.  Also thinking possibly drug-induced.

Put me in a great mood.  Lots of hope.   That was my mistake, apparently…

I went up to the RMHouse to take a quick nap.  I got a call about 45 minutes into my nap from the neuro fellow from yesterday asking me to come to Hannah’s bedside.  I rush down there, and there was the attending from yesterday, the fellow, and two neuro docs.

They were asking me about Hannah’s eye problems, how sometimes one eye will get stuck inward temporarily.  I explained that was pre-existing with her Gaucher’s disease and was not something brought on by this event.

Then the fellow asked if they could take a video of Hannah doing her movements to “share with a colleague” to get their input.  Sure, no problem.  Until he made the comment to the attending taking the video, “Make sure you get her left hand in there, see the left hand.”   I looked at her left hand, and I did not notice anything different except the same involuntary movements the rest of her body was making.

Then the attending told me they want to do a brain MRI to rule out a brain injury or “other abnormalities,” perhaps caused by her seizure, hypoxia, drug-induced, etc.  Now, I knew this was coming, because Dr. Schiffmann mentioned it to me.  However, now with this concerned look on all four of their faces, plus needing to take a video to show a colleague, and then all the other questions — I am scared…

What if there is a problem with her brain now?  Is that why she has not yet looked at me or noticed me yet?   Is that why she failed extubation because her brain is no longer communicating with her body the right way anymore?

Argh!!  I don’t know when the MRI is scheduled yet.  Hopefully I will find out today.

I told Daddy that if this brain MRI comes back abnormal, he is hoping on a plane to be here.  I’ve been able to handle all of this by myself up until now.  But if there is something deeper going on, I think I will just lose it.